Comments on: Scientists Say Chronic Lyme Disease Is Not Real http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/ News and Support for People with Lyme Disease Thu, 29 Jul 2010 20:30:47 +0000 http://wordpress.org/?v=2.2.1 By: admin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-4412 admin Tue, 03 Nov 2009 18:34:41 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-4412 Tammy, I have the same problem with things like the books of the Bible. It is so frustrating. I'm praying God will restore your memory. I'm doing a little better with things like balancing the checkbook, remembering names, etc. than I was and noticed the other day that I could remember some of my favorite Bible verses easily again, so I know that, with time and faith, it will happen for you, too. Tammy,
I have the same problem with things like the books of the Bible. It is so frustrating. I’m praying God will restore your memory. I’m doing a little better with things like balancing the checkbook, remembering names, etc. than I was and noticed the other day that I could remember some of my favorite Bible verses easily again, so I know that, with time and faith, it will happen for you, too.

]]> By: Tammy Konneker http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-4411 Tammy Konneker Tue, 03 Nov 2009 17:10:22 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-4411 Lyme....the very unforgiving disease. I was diagnosed in May but think I have probably had it longer than that. I am an RN...just recently was asked to resign my position due to being so ill. Did the doxycycline then IV rocephin for 3 weeks only to find out that they probably missed the spirochette lifecycle by not doing at least 4 weeks of IV rocephin. Am I getting better...YES...but no. Lyme definately does seem to cycle. I may have one good week where I feel pretty functional, other weeks I have so much joint pain, muscle pain, dizziness, nausea, headaches that I appear to be 90 years old at 38. I am very fortunate that I have a wonderful husband and family that have been very supportive. As there where many days I couldn't even figure out how to turn a radio on...I would just look at the buttons and couldn't comprehend what to do next. I used to be very involved in Womens Ministry but now have a hard time even finding the books of the bible which before I didn't even have to think about. I gain so much peace from reading others that struggle in the same way. It helps to know that you're not alone. Lyme….the very unforgiving disease. I was diagnosed in May but think I have probably had it longer than that. I am an RN…just recently was asked to resign my position due to being so ill. Did the doxycycline then IV rocephin for 3 weeks only to find out that they probably missed the spirochette lifecycle by not doing at least 4 weeks of IV rocephin. Am I getting better…YES…but no. Lyme definately does seem to cycle. I may have one good week where I feel pretty functional, other weeks I have so much joint pain, muscle pain, dizziness, nausea, headaches that I appear to be 90 years old at 38. I am very fortunate that I have a wonderful husband and family that have been very supportive. As there where many days I couldn’t even figure out how to turn a radio on…I would just look at the buttons and couldn’t comprehend what to do next. I used to be very involved in Womens Ministry but now have a hard time even finding the books of the bible which before I didn’t even have to think about. I gain so much peace from reading others that struggle in the same way. It helps to know that you’re not alone.

]]> By: Greg http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1895 Greg Wed, 27 May 2009 17:38:00 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1895 Jesssica, i understand. Every morning and being awake is horrible in terms of nerve and bone pain. I'm 20. Jesssica, i understand. Every morning and being awake is horrible in terms of nerve and bone pain. I’m 20.

]]> By: admin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1554 admin Sat, 07 Mar 2009 13:54:16 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1554 Jessica, I'm sorry to hear you are in so much pain. I had two years of Lyme's and complications from it and it really was hard. I can't imagine what you've gone through. Currently, I'm doing pretty well and only have residual joint pain when a front goes through. I did feel incredibly old and exhausted until my doctor diagnosed an underlying severe vitamin D deficiency. If you haven't been tested for the deficiency, please ask your doctor to test you, too. I was a few weeks away from a wheelchair from all of the pain when my doctor thought to do the test. It seems like the actual Lyme's disease is just the tip of the iceburg because it causes so many other things to go wrong. I'll be posting about it later, but my mom's little dog has Lyme's, which caused organ failure. I hope your doctors can come up with an effective treatment regimen for you. For a look at what some people went through and how the right treatment changed their lives, I recommend the award winning documentary Under Our Skin. It is a wonderful DVD and it is nice to see that someone else "gets it" even if you can't actually talk with them. Keep us posted on how you are doing. Katelyn Jessica,
I’m sorry to hear you are in so much pain. I had two years of Lyme’s and complications from it and it really was hard. I can’t imagine what you’ve gone through. Currently, I’m doing pretty well and only have residual joint pain when a front goes through.

I did feel incredibly old and exhausted until my doctor diagnosed an underlying severe vitamin D deficiency. If you haven’t been tested for the deficiency, please ask your doctor to test you, too. I was a few weeks away from a wheelchair from all of the pain when my doctor thought to do the test.

It seems like the actual Lyme’s disease is just the tip of the iceburg because it causes so many other things to go wrong. I’ll be posting about it later, but my mom’s little dog has Lyme’s, which caused organ failure.

I hope your doctors can come up with an effective treatment regimen for you. For a look at what some people went through and how the right treatment changed their lives, I recommend the award winning documentary Under Our Skin. It is a wonderful DVD and it is nice to see that someone else “gets it” even if you can’t actually talk with them.

Keep us posted on how you are doing.

Katelyn

]]> By: Jessica http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1544 Jessica Fri, 06 Mar 2009 07:32:36 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-1544 Lyme Disease has truly ruined my life. Ever since I was diagnosed in the fourth grade (one of the first peds. cases in MD.), I have slowly been deteriorating... I'm turning 23 next week and I feel like I'm 60. Doctors don't understand, and the other half who 'kind of' understand STILL wont help with at least treating all of the pain.... I can't even get out of bed in the mornings because it's so painful... my life is just, well, I make the best out of it & I'm thankful to be alive... but I'd be even more grateful for some answers, doctors who believe me, and mostly, just starting on some kind of planned path to fulfill life dreams... Is anyone else hurting like I am? This is my first time reaching out to a website... I guess I've reached the point where enough is enough- I literally can't bare another night. Lyme Disease has truly ruined my life. Ever since I was diagnosed in the fourth grade (one of the first peds. cases in MD.), I have slowly been deteriorating… I’m turning 23 next week and I feel like I’m 60. Doctors don’t understand, and the other half who ‘kind of’ understand STILL wont help with at least treating all of the pain…. I can’t even get out of bed in the mornings because it’s so painful… my life is just, well, I make the best out of it & I’m thankful to be alive… but I’d be even more grateful for some answers, doctors who believe me, and mostly, just starting on some kind of planned path to fulfill life dreams…

Is anyone else hurting like I am? This is my first time reaching out to a website… I guess I’ve reached the point where enough is enough- I literally can’t bare another night.

]]> By: Erin http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-782 Erin Fri, 03 Oct 2008 10:19:02 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-782 Our whole family (me, husband, 2 kids were just diagnosed in the the last few months. I am a nurse and do tons of research and reading--have all you people been tested and seriously clinically assessed for co-infections (ie: HME, bartonella, babesia, etc.)? The lyme treatment it appears does not work if the co-infections are not addressed--it comes back inits cycles (which means you still have it) if the co-infections are not also treated--Dr. Ernie Murakami says some co-infections MUST be addressed first. Get tested by IGENEX, go to drerniemurakami's website, and read Burrascano's treatment guidelines for co-infections (and lyme) from the canlyme website (Canadian lyme website). Our daughters each had/have 4 and 3 co-infections and I have at least one. Good luck, keep plugging, and search for doctors who will consult with Dr. Murakami, or who at least read and use Dr. Joseph Burrascano's guidelines. Our whole family (me, husband, 2 kids were just diagnosed in the the last few months. I am a nurse and do tons of research and reading–have all you people been tested and seriously clinically assessed for co-infections (ie: HME, bartonella, babesia, etc.)? The lyme treatment it appears does not work if the co-infections are not addressed–it comes back inits cycles (which means you still have it) if the co-infections are not also treated–Dr. Ernie Murakami says some co-infections MUST be addressed first. Get tested by IGENEX, go to drerniemurakami’s website, and read Burrascano’s treatment guidelines for co-infections (and lyme) from the canlyme website (Canadian lyme website). Our daughters each had/have 4 and 3 co-infections and I have at least one. Good luck, keep plugging, and search for doctors who will consult with Dr. Murakami, or who at least read and use Dr. Joseph Burrascano’s guidelines.

]]> By: preferNoNameNoCity http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-772 preferNoNameNoCity Thu, 02 Oct 2008 18:51:59 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-772 All I can say is Lyme sucks just as much as the moronic doctors who say 10 days of doxy is enough. Maybe there's no cure or treatment or anything. Someone will find it some day some where. Most likely someone who has it or who has a spouse, child, sibling or parent who has it. Why is it the only doctors who treat this are the one's who've had it? All I can say is Lyme sucks just as much as the moronic doctors who say 10 days of doxy is enough.

Maybe there’s no cure or treatment or anything. Someone will find it some day some where. Most likely someone who has it or who has a spouse, child, sibling or parent who has it.

Why is it the only doctors who treat this are the one’s who’ve had it?

]]> By: Morgaine http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-439 Morgaine Mon, 25 Aug 2008 01:46:07 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-439 Right. Does not exist. Went from being, a hiking, biking, skiing, kayaking, you name it athletic person...to a couch potatoe. Something which I detest, so please do not tell me I am making it up. Such absolute asses. May they all get Lyme and enjoy the ride. Right. Does not exist. Went from being, a hiking, biking, skiing, kayaking, you name it athletic person…to a couch potatoe. Something which I detest, so please do not tell me I am making it up. Such absolute asses. May they all get Lyme and enjoy the ride.

]]> By: Tara http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-190 Tara Tue, 13 May 2008 21:07:48 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-190 Thank you for shining the spotlight on Lyme related issues. I'd love to invite you to share your experiences with Lyme on Trusera.com, an online health network where you can find and share real-world experiences with others who've been there. Trusera was born out of our founder, Keith Schorsch's experience with Lyme disease, which took eleven doctors and finally one email from a friend to diagnose (http://www.trusera.com/users/storyguy/stories/the-bite-that-changed-my-life). The heart of our business is that it is way too hard for ordinary people to find relevant firsthand health insight online. Second, we believe people are more than their diagnosis; we want to create a place where people of a wide variety of health interests, attitudes, and perspectives can come together. Please let me know if I can send you an invitation to the site – would love to talk to you more about some meaningful programs to help build this resource. Warm Regards, Tara.holahan@trusera.com www.trusera.com Trusera username: teh4 Thank you for shining the spotlight on Lyme related issues. I’d love to invite you to share your experiences with Lyme on Trusera.com, an online health network where you can find and share real-world experiences with others who’ve been there. Trusera was born out of our founder, Keith Schorsch’s experience with Lyme disease, which took eleven doctors and finally one email from a friend to diagnose (http://www.trusera.com/users/storyguy/stories/the-bite-that-changed-my-life). The heart of our business is that it is way too hard for ordinary people to find relevant firsthand health insight online. Second, we believe people are more than their diagnosis; we want to create a place where people of a wide variety of health interests, attitudes, and perspectives can come together.
Please let me know if I can send you an invitation to the site – would love to talk to you more about some meaningful programs to help build this resource.
Warm Regards,
Tara.holahan@trusera.com
www.trusera.com
Trusera username: teh4

]]> By: Donald http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Donald Tue, 04 Mar 2008 17:54:37 +0000 http://lymeadvocate.com/scientists-say-chronic-lyme-disease-is-not-real/#comment-157 Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents. Hello, Lyme is real. I was totally strong and healthy at 30 years old. 2 weeks After bitten and have the bulls eye rash my life was never the same. Most if not all doctors will not address lyme and blow it off as myth. I now have severe authoritis and am on dissability. At present I am doing absolutly nothing for the lyme. The doctores all say it is reumatiod arteritis so that is what is beig treated. Thanks for the chance to put in my 2 cents.

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